How to explain to S.O. that just doing yoga and biking is all I need to do to feel better. It is hard enough accepting this diagnosis, but then to wake up feeling like crap and be told to just get down on the floor and do yoga, like that will fix it is just pushing me too close to the edge. How did you to let those close to you understand PSA any thoughts are appreciated.
RB
This is the question that never sleeps. I am sorry to say that I don't have any definitive answers, not even close. The ways in which we communicate how the disease affects us are highly individual I think. And they develop over time, may require a lot of thought, may be instinctive, depend greatly on the relationship we have with the people we're trying to get through to and so on.
My husband just gets it. I didn't have him down as the most intuitive of men, but evidently I was completely wrong. So for me that's enough. It's a real bonus that this site exists too - other people not understanding me and this stupid disease is one thing, but sometimes I can't take it in myself. As well as the fellow-feeling we find here, others' experiences provide a reality check when I start feeling like a loser with made-up symptoms.
I do try to widen the net. I almost think it's impossible and I almost don't care. Some people just accept other peoples' reality - it's in their nature. Others don't. Not sure we can change that.
One thing .... My oldest friend has some very odd form of fatigue syndrome, it comes and goes .... making her life very difficult for months at a time. It took PsA for me to even start to understand what she was going through. When we met up last month we had a great talk about loads of things, including that. I get it a bit more now. But she's had this going on for more than 15 years .....
Thank you Sybil, that made me feel a whole lot better. The crazy noise in my head has quieted just knowing it’s not just me…
I was thinking of a few people I know with chronic health problems who I particularly admire. My brother-in-law for example. He never goes into detail but he's very much his own man, kind of cocky about it all .... "nope, can't do that" or "I'll give it a go". Nobody ever feels like they have to take any responsibility for him, he's in the driving seat ... sets his own limits or tests them as he sees fit and the rest of us can take a hike! It took me a couple of years to realise how much he struggles but understanding sort of evolved in a gradual, easy-going way.
RowanBailey said:
Thank you Sybil, that made me feel a whole lot better. The crazy noise in my head has quieted just knowing it's not just me...
IT.IS.NOT.YOU. You are not imagining this. You need to push yourself a little to keep moving, but you also need to listen to your body. Listen very carefully. Do a very small bit of yoga and a few minutes on the bike. See how you feel. Rest when tired. Try again tomorrow. Finding the balance between the benefits of exercise and fatigue is a tricky one, and a moving target. But you will learn.
How to explain this to someone who doesn’t have this kind of disease, like Sybil says, is the mystery that none of us have solved yet.
In my world--family, a couple of my kids and my husband--they just don't understand. Our oldest child--my son who's 36, probably would be the most interested, but I don't talk with him about my PsA-I don't want to burden him with it. But, I wouldn't doubt that he's done some reading about it on his own, because he's always interested in knowing about everything. Our youngest, too--she's 23 and has had health issues of her own--she'd be sympathetic if I brought it up to her. My husband--that's a whole 'nother story. At work I'm sure they don't believe I even have PsA or psoriasis-when I told them of starting Enbrel and having PsA, they were so in lala land about what PsA was and I wasn't about to go into detail.
I don't think people can grasp it unless the outward signs are dramatic, and in my case they aren't. I do have to say I am aging really fast, and that is proof for me that PsA is harming me, and others are probably noticing that, too.
Thank you all so much. After the dust settled we started talking. I still don’t think that he fully understands but we are cleaning out the junk food and he is going on the new eating plan with me. It is a journey and I am just trying to pace myself. Not having to justify how I am feeling hopefully is behind me now.
I too face this problem…my husband just does NOT understand at all! Even though I’ve given him reading material and pointed him to several great websites, including this one, he doesn’t really read it and just skims it, and therefore still has zero understanding of what I’m going through. It’s as if HE is the one in denial!! Ridiculous!!
Sherry, I so understand where you are coming from. Unless I am full blown unfuctional, my hubby doesn’t notice either. Like I can just go and go like the energizer bunny. I worked through the new years holiday and just wanted to rest this weekend more than the world but he ok’d sleep over nights for both kids tonight which means a lot more running around and entertaining than even an adult party usually. Arg, can’t they just try to read the info and “get” half of it?
Hey there,i often think it would be useful to have crutches or a massive sign on my head explaining what my situation is but mostly apart from my limp and flaky skin hidden under clothes my PA is invisible to most…happily…and sadly my 8&6 yr old sons know and often wait at end of my comfy chair, arms outstretched to help lever me up!!
For my husband and I, it was a long process of acceptance. Before I was diagnosed and medicated, I spent a LONG time doing nothing but working, coming home and not sleeping well. Paul spent a LONG time getting more and more frustrated that I couldn't do the things we used to do. He was frustrated that I would not take the step to see a rheumatologist. I was frustrated that I couldn't take that step either.
When I went through my cancer scare August-December 2014, slowly, slowly we began to talk.We cried a lot. We talked about how frustrated we both were by PsA. We were more bluntly honest with each other than we had ever been in the 35 years (then) we had known each other, more bluntly honest than we had ever been in the 31 (then) years of our marriage. We cried some more. We found our way back to each other because we're better together than we are separately.
This past summer, because I'm properly medicated for PsA, Graves disease and hyperplasia and because I'm feeling better than in over 10 years (you read that right), we did more than any time since this PsA journey started. We' saw John Prine in concert the end of June, Vince Gill on 9/12 and Don Williams on 10/17 in Gatlinburg. He's been to court with me several times and the week of December 7-11, this past year, saw me in action for my trial client.
It took A LOT of talking and A LOT of tears on both our parts to get to this point. I won't be feeling particularly well, trying to keep it to myself and all of a sudden, he'll say your breathing changed. Where are you in pain? Or he'll say your face is tight, what's going on? Sometimes, he'll simply get up from the chair, come around to my shoulders and start massaging. When I say I'm all right, he gives me that look and goes on. The other morning, I got up early because my c-spine issues were acting up and my left shoulder was giving me hell. When he got up, he started to let the dog out, turned around, came to where I was on the couch and looked down into my face. He asked how long I had been awake and how long my shoudler had been hurting. I asked how he knew and he said he could see I'd been crying.
Granted, we've been together 36 years, he knows me better than any other human being on this earth but it took us a LONG time to get here.
My employer is a whole different matter. I decided over Christmas that last year was a year of acceptance of my inabilities while I continue to work to improve, that the two can coexist and that this year was a year when I don't give a damn if people don't think I'm sick. Paul and I are in a good place. He's pleased with where I am. My doctor is pleased with where I am. I can be cordial with most of my colleagues but they are simply not a part of the small number of things important in my life. I've separated myself and am better for it.
Sixcat, you’re amazing. How lucky we are to have a friend like you here: thoughtful, perceptive and so willing to share her wisdom. Thank you.
Big hugs from me.
I find it very difficult to explain my arthritis and fibromyalgia to people.Apparently "its just pain get up ands get on with it" and i get other similar replies from people.It's so frustrating.i need a sign on my head saying'sick person here' or something like that so i can get understood by people in my life.
Probably the only way they'll get it is if they get ill. It's hard to understand our own disease, don't you think? I know I still battle with myself, telling myself to get on with everything and stop making excuses! If I were my best friend I wouldn't want anything to do with myself anymore.
How are you these days Queenpink?
Queenpink said:
I find it very difficult to explain my arthritis and fibromyalgia to people.Apparently "its just pain get up ands get on with it" and i get other similar replies from people.It's so frustrating.i need a sign on my head saying'sick person here' or something like that so i can get understood by people in my life.
Seenie: Coming from you, I consider that high praise and a great compliment. Thank you.
Hard won that wisdom. I was thinking this morning if I would go through the same hell again if it led Paul and me to the blessing of our relationship now. I decided I would because even though what we had was wonderful, those experiences have made us the people we are and what we share so much more and so much deeper.
What we have--the support he gives me--made my decisions about work and decision to give up caring what people think about this illness that *I* know is real so much easier. Case in point, I'm working at home today so I can keep ice on the right hip/thigh and heat on the shoulder radiculopathy from the c-spine issues. My boss will just have to deal.
Seenie said:
Sixcat, you're amazing. How lucky we are to have a friend like you here: thoughtful, perceptive and so willing to share her wisdom. Thank you.
Big hugs from me.
Sixcat, you have an amazing relationship with your husband. I've been married almost 43 years and we don't have that closeness. My husband has always been the one with the worst of everything, so it's pointless to bring up my problems to him. No matter what, he's ALWAYS had it worse than me. His mom was the same way. If I mentioned to her I was having a really bad headache she'd say don't complain, I'm in pain all the time--you don't know what pain is!!!! So, pretty sure that's how my husband feels, too. On top of that, it's not easy at all to tell people this or that hurts. I was lucky to find this site when I did because I was pretty much going crazy internalizing everything and trying to push on through all of it without any support. It's even hard for me to complain to my doctor. In the back of my head I'm thinking he must be so sick of hearing people whine and complain about their horrible situation--ugh I don't want him to get annoyed with me. Even though, that's why he makes the big bucks!!!
But then, my general PsA pain wasn't "killer" pain--as long as I kept moving. (It was pretty bad when I sat still for more than a few seconds--so I guess I should say there was some killer pain!). I'm luckier than some PsA sufferers, though, because I don't have pain in my large joints. I'm so much better on Enbrel that it's hard to imagine having all that pain again--I know it was bad and anything I have now with my feet, my ears ringing, or some general stiffness is nowhere near how bad it was!!! So, for now I shouldn't complain or look for.understanding. It definitely could be way worse.
Some people get it, some never will. Don't let the "never wills" bring you down. I recently read the "spoon theory" on Facebook, it's gotten very popular as a way to explain to people what is going on with us folks that don't "look sick" and struggle with chronic pain and fatigue. I thought it was a good metaphor and have used it a time or two, its easily found on Google by now.
I'm fortunate to have a supportive and understanding husband, he's a firefighter-paramedic, so he's medically knowledgeable and in the business of "saving" so he has his hands full with me when I'm sick from PsA, sick from being immune suppressed and sick from side effects. Oh, don't forget sick of being sick and tired!
I’m so jealous that you saw John Prine! A little jealous of Vince Gill too. 
We saw Willie and Loretta Lynn last year.
It seems like you and I found similar priorities with family and work. I found the same thing; there are some things that just aren’t as important as they once were. It takes some time to figure out where your energies are best used when you’re used to doing it all.
sixcatlawyer said:
For my husband and I, it was a long process of acceptance. Before I was diagnosed and medicated, I spent a LONG time doing nothing but working, coming home and not sleeping well. Paul spent a LONG time getting more and more frustrated that I couldn’t do the things we used to do. He was frustrated that I would not take the step to see a rheumatologist. I was frustrated that I couldn’t take that step either.
When I went through my cancer scare August-December 2014, slowly, slowly we began to talk.We cried a lot. We talked about how frustrated we both were by PsA. We were more bluntly honest with each other than we had ever been in the 35 years (then) we had known each other, more bluntly honest than we had ever been in the 31 (then) years of our marriage. We cried some more. We found our way back to each other because we’re better together than we are separately.
This past summer, because I’m properly medicated for PsA, Graves disease and hyperplasia and because I’m feeling better than in over 10 years (you read that right), we did more than any time since this PsA journey started. We’ saw John Prine in concert the end of June, Vince Gill on 9/12 and Don Williams on 10/17 in Gatlinburg. He’s been to court with me several times and the week of December 7-11, this past year, saw me in action for my trial client.
It took A LOT of talking and A LOT of tears on both our parts to get to this point. I won’t be feeling particularly well, trying to keep it to myself and all of a sudden, he’ll say your breathing changed. Where are you in pain? Or he’ll say your face is tight, what’s going on? Sometimes, he’ll simply get up from the chair, come around to my shoulders and start massaging. When I say I’m all right, he gives me that look and goes on. The other morning, I got up early because my c-spine issues were acting up and my left shoulder was giving me hell. When he got up, he started to let the dog out, turned around, came to where I was on the couch and looked down into my face. He asked how long I had been awake and how long my shoudler had been hurting. I asked how he knew and he said he could see I’d been crying.
Granted, we’ve been together 36 years, he knows me better than any other human being on this earth but it took us a LONG time to get here.
My employer is a whole different matter. I decided over Christmas that last year was a year of acceptance of my inabilities while I continue to work to improve, that the two can coexist and that this year was a year when I don’t give a damn if people don’t think I’m sick. Paul and I are in a good place. He’s pleased with where I am. My doctor is pleased with where I am. I can be cordial with most of my colleagues but they are simply not a part of the small number of things important in my life. I’ve separated myself and am better for it.